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Topic: Now I understand! (Read 282 times) |
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WebFangler
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Thank you!!! .... Understanding at last!
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Now I understand!
« on: Dec 7th, 2002, 3:55am » |
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Every year for the past four years I’ve suffered this excruciating pain. Debilitating in the extreme and coming mainly at night, every aspect of my life suffers. My girlfriend thinks I’m developing some kind of terminal illness and is, understandably, stressed. My work suffers through lack of attention brought on by minimal sleep. My state of mind turns from happy and outgoing to bleak and insular....... Another year, another kick in the nuts!
This year has been the worst. For nearly 2 months now I’ve been waking with the pain 1-3 times a night. My Doctor diagnosed a sinus infection and so far I’ve had three different courses of antibiotics and 2 different types of painkiller including Dihydrocodeine. (oh.. what a lovely drug this is ....... not!) and enough x-rays to irradiate a small nation. Funnily enough none of this has so much as dented the problem.
Needless to say the Doc is now stumped so he’s palmed me off on a neurologist (at a hellish cost)
So I started surfing and found your site and it all clicked into place. I realise that self-diagnosis is not necessarily a good thing but having read through many of the articles in this board, having taken the ‘Cluster Quiz’ and having examined other sites that list Cluster symptoms….. it seems obvious.
Now, armed with this valuable knowledge, I can march into his surgery on Monday and say ‘Treat me for this’ (and I’ll try not to curse)
Thank you all for drawing aside the curtains and allowing light to fill this dark room.
Steve Lee
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Strength does not come from physical capacity. It comes from an indomitable will.--Mahatma Gandhi
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ave
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Good luck Steve when you visit the neuro. Just a tip: don;'t just take the knowledge, take printouts of the info on this site! It has convinced other docs before.
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Charlie
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Re: Now I understand!
« Reply #2 on: Dec 7th, 2002, 4:34am » |
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Sad to welcome another aboard but it looks as though you found the right place. One of my key questions is: Do they wake you up? Mine did all the time.
Ave knows her stuff. Print out what you think may be of help to your doctors. Good luck and here is a little thing that should be helpful to employers, friends and family. It's worth a print out too:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a technique that I and a few others have had some good luck with:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: Now I understand!
« Reply #3 on: Dec 7th, 2002, 5:15am » |
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Lemma see if I got this right.....
Narcotics didn't work (duh)
GP is stumped. Sent you to a Neurologist.who is now going to tqke to to surgery for ?????what?
.Please let us know how you managed not to curse on Monday.
Linda Howell
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WebFangler
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Thank you!!! .... Understanding at last!
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Re: Now I understand!
« Reply #4 on: Dec 7th, 2002, 9:25am » |
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Hi
Thanks for the advice.
Yes Charlie, I most often wake up with the headache at 2am and 6am. Very rarely do they start at any other time. The 6am one is particularly punctual handily finishing around 8ish just in time for me to catch the train to work. What about you? Are yours nocturnal and do they have any degree of regularity? I’ll give your Circulatory Technique a go and let you know how I get on.
I will print the info before I visit the doc (thanks ave) and your link, Charlie, will prove most helpful.
Linda… Read the papers next week for reports of a drug crazed mad man dangling a doctor by his foot from a 4th floor window… That’ll probably be me. 
Take care all
Steve
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Strength does not come from physical capacity. It comes from an indomitable will.--Mahatma Gandhi
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domm
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I love YaBB 1G - SP1!
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Re: Now I understand!
« Reply #5 on: Dec 7th, 2002, 9:40am » |
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Steve - sorry you're in pain, but glad you found us. Here's another site a bit closer to home for you.
http://www.clusterheadaches.org.uk/
You want to end up with a script for Oxygen, Imitrex (Imigrain in the UK) and a preventative (Verapamil works for many of us.) Read, read, and read more. When you are done - you will know more than many of the docs out there.
Hang in there - this beast can be tamed
PFDANs or as they say in the UK - sleep well
domm
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Charlie
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Re: Now I understand!
« Reply #6 on: Dec 7th, 2002, 3:02pm » |
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Well, it's been 11 years since I had an attack but I could count on about 4 or five a day; 2 of them always at night. The first nocturnal was always about 1-1/2 hours after falling asleep. That's when too many of us have them. I usually got another late in the wee hours as well. Sometimes later and it was the only thing under the sun that got me up early. I was full of anti-seizure barbiturates then and it took an earthquake to get me to stir.
So, you were named for Web Fangler, the famous sheriff of Grimey Gulch Arizona? 
Cool 
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Azrael
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Re: Now I understand!
« Reply #7 on: Dec 7th, 2002, 4:04pm » |
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Welcome to the board! Sorry that the beast is havin' a million fireants borrow their way out of your cranium through your eye. Good luck!
PFDAN........................... Drk^Angel
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2late
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Ride Free..Pain Free
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Re: Now I understand!
« Reply #8 on: Dec 7th, 2002, 4:10pm » |
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welcome to the board! i agree with charlie, they alway's wake me up when i'm in cycle. good luck at the neuro, give em' hell cause you have more knowledge than he does if it is ch. ..........2late
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WebFangler
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Thank you!!! .... Understanding at last!
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Re: Now I understand!
« Reply #9 on: Dec 8th, 2002, 5:49am » |
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Hi Gang
Thanks for all the good advice... It's nice to know you're out there. ;D
As I have'nt a clue who the 'famous sheriff of Grimey Gulch Arizona' is so I cant say i've taken my name from that! I design web sites for a living and 'Fangling' here in the uk is a slang term for creating/making/facilitating .... that kind of thing... hence WebFangler.
Dark Angel... 'the beast is havin' a million fireants borrow their way out of your cranium through your eye'..... how apt. It suits both the condition and your handle.
I have a question.. Do any of you suffer a low-grade version of the beast (i'm getting the lingo now) during the day. For instance.. I'm sitting here now with a version of the beast. It feels just the same but is many times weeker. I've had this all day so far and it probably wont disapear for a few hours yet......is this usual?
Take care all... and thanks for all the good advice.
Steve
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Strength does not come from physical capacity. It comes from an indomitable will.--Mahatma Gandhi
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Charlie
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Re: Now I understand!
« Reply #10 on: Dec 8th, 2002, 6:22am » |
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Thanks Steve:
I learn something every day. I like the sound of Fangler. I was having some fun because Web Fangler sounds like an appropriate name for a country and western singer or a Nashville Disc Jockey. It's one of the better handles. Lots of Webbs in them thar hills. 
Drk's job is to come up with those depictions of cluster headache pain. We look forward to it. My job is to bombard the members with the circulatory tecnique. I got you earlier
We have had several web fanglers here. "Mob" is still around I think and he works over there with you somewhere. Others know him well and can fill you in if they so desire.
Your low grade version of the beast sounds very much like what has been called "shadows." I have had nothing like it. I cannot comfortably use the Kip scale either. Every attack or bout has been the same intensity. Horrible. My 11 year remission may have affected my perception, however. My remission began during a very stressful time and I'm also an epileptic and 56 which may be the main factor.
I am a windy sort. 
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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SommelierCH
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Re: Now I understand!
« Reply #11 on: Dec 8th, 2002, 6:48am » |
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As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.
What works for me is a triptan, Maxalt MLT 10mg. (a fast acting, under the tongue dissolving tablet) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My major ones are alcohol, bright light entering my right eye and some times flickering florescent lights. Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
I also use Zomig ZMT 5 mg. last night, (it too is a fast acting triptan dissolving tab under the tongue) and it works, with the oxygen, of course. Zomig ZMT 5mg. is twice as expensive as Maxalt MLT 10mg. Since I ALWAYS get the Big One shortly after falling asleep, I now take a tab as I go to bed. The half life of these tabs is 2-3 hours and I’ve been able to (seriously) get several nights of full, deep, sleep in the past couple of weeks, since Jonny gave me the info. Even if it’s not 8 straight hours, it has certainly stopped my 30+ hours awake at a stretch.
The cumulative amount of knowledge residing within these people on the board, is amazing. Give them as much info about your problem (see “Hints for your first post”) and they will be able to help that much more.
Good luck, friend,
David J.
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